New Here, Different Kind of Flare, Looking for Others' Experiences

[Sionnan]

HI. I was diagnosed 22 years ago, along with costochondritis, but mostly minimal symptoms until 2019 when a diptheria/tetanus vaccine made things worse, but still, symptoms were manageable. In November 2024 I caught a weird virus and had post-viral syndrome (not covid) and things have changed. I started feeling better about a month ago, but last Friday I woke up with pain, tightness and burning/tingling in both hands and arms and upper front of thighs, worse fatigue and total mindlessness. Since, the pains are moving around, shoulders, upper cervical, knee, lower back, nothing consistent, but still, hands and forearms have that weird feeling. All these seems better in the afternoon and evening, especially after I eat. I do not take any medications, the one thing that worked for me, my doctor is now (after 30 years of an occasional minimal dose) hesitant to give me because it "causes dementia". That's a whole 'nuther rant. Anyway, just wanting to know if anyone else has experienced these odd, worsening symptoms after all this time. There's a lot more to this story but my post is too long as it is. :] Appreciate any experiences, thoughts and advice. Thank you.

 

[sunkacola]

Hi @Sionnan . Don't worry about your post being too long. It is not a long post, and in fact you are invited to write as much as you want to on this forum, and long posts....as along as you want... if you want to do that. The only thing we ask is that if you are going to write a long post you break it up into paragraphs (no longer for each than what you wrote above is fine) only because some folks here have a hard time reading very large blocks of text that don't have breaks.

Many people do report that their symptoms get worse over time. It is really not known scientifically whether fibromyalgia gets worse or not, and at this point it is considered a non-progressive syndrome. However, as we age of course things in our bodies don't work as well as they used to, pain can feel worse, and the body takes longer to heal, and the feeling that the fibro is getting worse might only be that. It's just not known for sure.

I am sure others here will join in to reply to you as well, and you can ask us any specific questions that you may have. We are all here because we want to help each other, and I hope this forum is useful to you.

What medication are you being told "causes dementia"? That sounds a little bit strange to me, but I am not a doctor!

 

[Sionnan]

Paragraph advice noted. Thank you.

I too have heard that fibro is not progressive, but I have doubts, particularly now. But I do agree that age must be at least part of the reason it feels like it's getting worse. This flare is worrying me though.

The medication that I'm arguing with my doctor about is alprazolam. I have taken it for at least 30 years as needed, 1/2 of the lowest possible dose, off. According to some, probably not even a therapeutic dose. It has helped tremendously, placebo effect or not, and my doctor knows that. But apparently it has been study-proven to have the potential to cause dementia as one ages......or not, depending on who you believe.

 

[sunkacola]

I hope that you can resolve this medication issue. What your doctor is doing doesn't seem reasonable to me. I also am of the opinion....one not shared by the medical community....that individuals should have the right, if they are adult and competent, to make their own decisions about such things as this. There's almost a tyranny in the medical profession, by which they make decisions for their patients that I believe should be left up to the patients themselves, since after all it is their lives and their bodies. Something like this, I think the patient should receive full information about the possible dangers and then given the medication they want to have. Just my opinion, of course.

 

[SBee]

Agreed @sunkacola I try to do as much research as I can (from reputable sites) as to medications, and also discussions with others who take or try such meds, whether they be prescribed by a medical professional, or over the counter meds\supplements. Obviously we all react differently to such treatments - in both positive or negative ways- but I definitely welcome the opportunity to actually discuss with my GP\consultant my choices. Some meds I have no choice in taking for health conditions, but I have taken myself off non essential meds if I feel they are no longer beneficial to me.
We should all be included in being able to speak with the professionals so we can make an informed choice.

 

[JamieMarc]

Yes, I also suffer from pain, stiffness, burning and tingling sensations in my hands and arms, with my right side being worse than the left. Gabapentin, most likely the drug you did not name, does help with my nerve pain, but not the stiffness. That is another issue that I am seeing a rheumatologist about.

Gabapentin can worsen existing dementia, but there is no evidence that it CAUSES dementia. I spoke with my doctor about this very subject last week. I have taken it on and off for decades and do not have dementia. Should I begin to experience problems associated with dementia (which does not include normal forgetfulness, absentmindedness, etc), then that would be the time to discuss discontinuance of gabapentin with my doc. For example, if I found one day that I could not follow a simple recipe, that would be a clear sign of dementia or some cognitive problem.

But yes, I too suffer from what you described for decades now, and my neuropathy is a result of a viral infection. Therefore, it is quite possible that the virus you encountered could be the culprit.

Hugs!

 

[JamieMarc]

Addendum...I read that the med you were referring to that causes dementia is alprazolam. I have been taking benzodiazepines for decades, also, but no dementia. It has been suggested that long-term use of benzodiazepines can cause dementia, but I cannot remember where I read that. I believe it is only a possible side effect that would only affect some patients. None of my doctors, however, has ever suggested to me that benzos cause dementia. The benefits for me outweigh this POTENTIAL side effect, but as I have been taking them for decades, I think by now I would have noticed signs of dementia.

No benzo I have ever taken has helped with the symptoms you describe. It is an anxiolytic and PTSD medication. However, if it helped you significantly, I would advise you to seek the advice of another physician.

 

[Gypsy_Flutterby]

I also took alprazolam for at least 20 years. I sometimes wonder if taking it might have caused fibromyalgia because it is a CNS depressant and FM is a disorder of the nervous system. I quit taking it a few years ago and most days I wish I hadn't

I have also had the same experience with feeling worse. My arms, wrists and hands feel like I have carpal tunnel. Most of the time I feel like my whole body is buzzing with electricity. And I think it is related to an Epstein Barr reactivation. I'm not sure if viruses aren't to blame for FM altogether. I just wish they knew or were actually trying to find something that actually helps or explains what this is. It feels like a death sentence but with no actual death. Just living in hell for who knows how long because "there's nothing actually wrong with you". But it feels like you have about 50 diagnoses of things that are if you Google the symptoms.

I can't work, I can't function. I don't know how to continue to exist this way. My only family support is my son and I feel that I am a burden and impeding his ability to have a life as well

 

[JamieMarc]

@Gypsy_Flutterby I wouldn't go that far. Benzos act almost exactly the same way as alcohol on the CNS according to a physician I had in 2020. If benzos caused FM, tens of millions of alcohol drinkers in the US alone would have FM. Yet, that is not the case. Not to mention, alcohol is much more potent than any benzo when taken as prescribed.

According to my current pain management doc (and I've posted this before), people with FM process pain differently within the brain. And there is also mounting evidence that FM is linked to severe trauma. I'm not going to go into great detail here because the OP asked about whether others had the same or similar painful sensations they are having. I think a debate on benzos would be best discussed in a separate post if someone wishes to.

Please don't feel that you are a burden to anyone. Be grateful that you have family support. Many of us, myself included, do not have that. Don't presume you know what your son is thinking or how he feels. Your son had a choice, and he chose you. You are blessed to have that. And it's healthy to lean on one another and ask for help when you need it. How would your son feel if you didn't ask for his help? I have hurt people in my life because I was hurting and didn't reach out to those who care about me the most. I have always been very self-sufficient, and it is a hard habit to break, but I realize that not only is it important to not silence myself when I am hurting, but also to make certain the people in my life know that I am here for them.

If you feel that you are a burden to your son, that is additional stress you're unnecessarily placing upon yourself, making your FM worse. Rather than assuming this, talk to your son openly and honestly about your feelings. You may be surprised what he has to say. Most importantly, you should unburden yourself of this belief, and I believe the best way to do that is to speak to your son heart to heart.

Hugs!

 

[Radmun]

@Gypsy_Flutterby, please hang in there. I know the sound of desperation all too well. If you are living in the USA, I would try to find a pain clinic associated with a University Hospital. For example, I go to the University of Madison Pain Clinic. There has to be some form of medicine and Physical Therapy that will at least diminish some of your pain.

Meanwhile, have you tried soaking in an epsom salt bath for 20 minutes? In your situation, I think I would soak at least two times a day to help with the buzzing feeling, which I get from time to time.

One of the biggest culprits to our feeling so crappy, is our muscles get so tight which puts pressure on our nerves and then we experience pain. Please look up on YouTube, Dr Daniel Clauw. He has been doing research on Fibromyalgia for years and trains other doctors about the disease and how to treat it. He is employed by the University of Michigan and his research is funded by the United Stated Defense Department because so many military personnel are being diagnosed with FM.

I do believe you can find a doctor to help you. Please don’t give up.

 

[dramaqueen]

Hi Sionnan,

I get the same sensations especially down my spine & back,I also get it in hands fingers wrist upper arm,but I have carpel tunnel etc so its hard to say which is which ?
Constance x

 

[JamieMarc]

@dramaqueen
I had carpal tunnel surgery. The orthopedist presumed that was what was causing my right hand, wrist and arm pain, worse than my left has ever been. Yet, despite the surgery, nothing changed. Presumably, you have not had carpal tunnel surgery. If so, don't rush into having it done without significant evidence from one or more, preferably, specialists.

 

[Sionnan]

I want to thank everyone for the comments, thoughts and advice. I'm still dealing with this, but I'm trying to override the anxiety. Finding this forum and such kind people will help, I'm sure.

In regard to the alprazolam, I agree with what was discussed above. I think it might help somewhat in that my stress/anxiety levels can be overwhelming and I literally tense every muscle in my body. The alprazolam relaxes me, which in turn takes the tension off.

While I tend to think my fibro was caused by a virus and stress and not related to the Xanax, I can see how a rebound may cause someone's symptoms to worsen possibly leading to a conclusion that the Xanax caused it. You get used to a level of calm or no tension and then you don't have that, muscles would revert back to a tense state, thereby making it more painful? Either way, as someone said, for the medical profession to just put a stop to it to me is not logical. I love my doctor but we are going to have to have a serious talk. LOL

Anyway, it seems like the electric feeling is mostly gone, the weakness comes and goes and I"m trying not to let the fatigue and pain get me. I have a really irrational fear to a very rare disease (I won't name, because if anyone is like me, it will put an idea in their head :} so it makes this whole thing worse.

Ms. Gypsy, I too have Epstein-Barre, but all the testing has been so contradictory. All I know is I came back from a 3 week stay in Europe and the second day I was home I had a terrible flu that seemed to last and then a year later I was diagnosed with fibromyalgia. I have been fairly self-sufficient but with this one, I've had to ask my son with a few things. It's not pleasant having to ask for help. JamieMarc had good advice. Consider talking to your son about how he feels.

Again, thank you to all here who share their stories. It makes me sad that this is such a vicious thing but I appreciate your posts.

 

[JamieMarc]

@Sionnan Hugs, hugs and hugs!

 

[dramaqueen]

Thank you.

The doctor tells me ts a piece of cake minor surgery!!

I have so much going on at the moment all happening at once,balance issues as well falling to one side on the left but not dizzy ?
Going to have an eye test tomorrow as my vision again in the left eye isn't as it should be?
I appreciate your input.

Constance.